BethU
Extremely helpful member
- Joined
- May 11, 2008
- Messages
- 2,646
- Reason
- PALS
- Diagnosis
- 05/2008
- Country
- US
- State
- California
- City
- Los Angeles
Hi ... I posted before that I had an "MG crisis" because that's what my third neuro labeled it. However, I have since been diagnosed with ALS and MG is out of the picture, so I'm not really sure what happened to me in December. It was labeled "respiratory failure" but I have heart disease, too, so that could have contributed.
I was diagnosed with MG partly on the basis of this episode.
Here's what happened: I started feeling very, very short of breath one day. (I had been having neuro symptoms for over 1 1/2 years, and shortness of breath was a constant problem.) The SOB continued to get worse and worse as the day wore on. About 8 p.m., I began to panic because it wasn't leveling off, so my husband called 911, and I got ready for the hospital. I remember the paramedics arriving. The next thing I remember is waking up entubated in ICU, with no idea how I got there. (When I woke up, I thought I was in a Chinese restaurant ... I always go completely bonkers in hospitals.)
I was in the hospital for almost 3 weeks (over Christmas ... what fun!), on oxygen the whole time, and with respiratory therapy 4x a day.
Apparently I had been awake on the ambulance ride but when I got to the ER, I stopped breathing. I didn't discover that they had cut my clothes off in the ER until I tried to get dressed to go home, and found my clothes all cut in half. I ended up leaving the hospital in scrubs.
Since then, I have been on inhalers 4x a day and under the care of a pulmonologist, but my lung function is not too bad for someone with ALS.
The only thing I know for sure is that if there is any possibility of your having MG, do not mess around with respiratory symptoms. A possible MG crisis is a medical emergency.
Hope this helps. If you are having serious SOB problems and see a doctor or paramedic, tell him/her about your neuro symptoms. That is important info for them to have.
BethU
I was diagnosed with MG partly on the basis of this episode.
Here's what happened: I started feeling very, very short of breath one day. (I had been having neuro symptoms for over 1 1/2 years, and shortness of breath was a constant problem.) The SOB continued to get worse and worse as the day wore on. About 8 p.m., I began to panic because it wasn't leveling off, so my husband called 911, and I got ready for the hospital. I remember the paramedics arriving. The next thing I remember is waking up entubated in ICU, with no idea how I got there. (When I woke up, I thought I was in a Chinese restaurant ... I always go completely bonkers in hospitals.)
I was in the hospital for almost 3 weeks (over Christmas ... what fun!), on oxygen the whole time, and with respiratory therapy 4x a day.
Apparently I had been awake on the ambulance ride but when I got to the ER, I stopped breathing. I didn't discover that they had cut my clothes off in the ER until I tried to get dressed to go home, and found my clothes all cut in half. I ended up leaving the hospital in scrubs.
Since then, I have been on inhalers 4x a day and under the care of a pulmonologist, but my lung function is not too bad for someone with ALS.
The only thing I know for sure is that if there is any possibility of your having MG, do not mess around with respiratory symptoms. A possible MG crisis is a medical emergency.
Hope this helps. If you are having serious SOB problems and see a doctor or paramedic, tell him/her about your neuro symptoms. That is important info for them to have.
BethU